GAtherton, Author at Aspergillosis Patients & Carers Support

The Role of Speech & Language Therapy (SALT)

Did you know Speech and language therapists (SLTs) play a crucial role in the management of patients with respiratory conditions?

The Royal College of Speech and Language Therapists (RCSLT) comprehensive factsheet on Upper Airway Disorders (UADs), is an essential guide designed for patients managing chronic respiratory conditions such as CPA, ABPA, COPD, asthma, and bronchiectasis. This resource aims to highlight the often-overlooked possibility of co-existing upper airway disorders, which can significantly complicate the management and treatment outcomes of these chronic respiratory diseases.

Within these pages, you will find detailed insights into the symptoms, diagnostic challenges, and effective management strategies for UADs. The leaflet emphasises the critical role of Speech and Language Therapists (SLTs) in assessing and treating these disorders. SLTs are key to providing targeted interventions that can alleviate symptoms and improve daily life.

This leaflet also aims to raise awareness amongst clinicians about the importance of considering UADs in the differential diagnosis of respiratory conditions. Enhanced understanding of these disorders can lead to better patient outcomes and improved quality of life.

To access the leaflet, click here.

by GAtherton

Understanding How Our Lungs Fight Fungus

Airway epithelial cells (AECs) are a key component of the human respiratory system: The first line of defence against airborne pathogens such as Aspergillus fumigatus (Af), AECs play a crucial role in initiating host defence and controlling immune responses and are important in maintaining respiratory health and preventing infections that can lead to conditions such as aspergillosis. Research by the University of Manchester’s Dr Margherita Bertuzzi and her team sought to understand how AECs combat Af and what leads to vulnerabilities in these defences, particularly in individuals with underlying health conditions.

Previous work by Dr Bertuzzi and her team demonstrated that AECs are effective in stopping the fungus from causing harm when they are functioning well. However, in people who are at higher risk, like those with weakened immune systems or existing lung conditions, if these cells are not working correctly, the fungus can take advantage of this situation.

This new research by Dr Bertuzzi and her team aimed to explore how AECs stop the fungus in healthy people and what goes wrong in people who get sick. The team looked closely at the interaction between the fungus and lung cells from both healthy individuals and those with certain diseases. Using advanced scientific methods, the team was able to observe the interactions between the lung cells and the fungus at a very detailed level.

What They Found

Experiments showed that the stage of fungal growth was important and a surface carbohydrate – mannose (a sugar) also had a role in the process.

Specifically, they discovered that the fungus is more likely to be taken up by lung cells when it has been growing for a few hours compared to when it’s just a fresh spore. Swollen fungal spores that were locked at 3 and 6 hours of germination were 2-fold more readily internalised than those locked at 0 hours. They also identified that a sugar molecule called mannose on the surface of the fungus plays a big role in this process.

Mannose is a type of sugar molecule that can be found on the surface of various cells, including those of pathogens like Aspergillus fumigatus. This sugar plays an important role in the interactions between the fungus and the host’s cells, particularly the AECs lining the lungs. In a healthy immune response, mannose on the surface of pathogens can be recognised by mannose receptors on immune cells, triggering a series of immune responses aimed at eliminating the pathogen. However, Aspergillus fumigatus has evolved to exploit this interaction, allowing it to adhere to and invade lung cells more effectively. The presence of mannose on the fungus’ surface facilitates its binding to mannose-binding lectins (MBLs) (proteins that bind specifically to mannose) on the surface of lung cells. This binding can promote the internalisation of the fungus into the lung cells, where it can reside and potentially cause infection.

The research highlighted the possibility of manipulating this interaction as a means to combat fungal infections. By adding mannose or mannose-binding lectins like Concanavalin A, researchers could significantly reduce the fungus’s ability to invade lung cells. This reduction was accomplished by essentially “competing” with the fungus for the binding sites on the lung cells or by directly blocking the fungal mannose, thereby inhibiting the interaction that facilitates fungal infection.

Why does it matter?

Understanding these interactions gives us important insights into how our lungs protect us from fungal infections and what goes wrong in people who are vulnerable to such infections. This knowledge could help in creating new treatments against pathogens like Aspergillus fumigatus.

You can read the full abstract here.

by GAtherton

Chronic illness diagnosis and guilt

Living with a chronic disease can often lead to feelings of guilt, but it's important to recognize that these feelings are common and perfectly normal. Here are some reasons why individuals with chronic illnesses may experience guilt:

Burden on others: People with chronic illnesses may feel guilty about the impact their condition has on their loved ones, such as needing assistance with daily tasks, financial strain, or emotional stress. They may feel like they're a burden on their family and friends, which can lead to feelings of guilt and self-blame.
Inability to fulfill roles: Chronic illnesses can affect a person's ability to fulfil their roles and responsibilities, whether it's at work, in relationships, or within their family. They may feel guilty for not being able to meet expectations or for having to rely on others for support.
Perceived lack of productivity: Chronic illnesses can limit a person's ability to engage in activities they once enjoyed or pursue their goals and aspirations. They may feel guilty for not being as productive or accomplished as they were before their diagnosis.
Self-blame: Some individuals may blame themselves for their illness, whether it's due to lifestyle factors, genetics, or other reasons. They may feel guilty for not taking better care of themselves or for somehow causing their condition.
Comparison with others: Seeing others who appear healthy and able-bodied may trigger feelings of guilt or inadequacy in individuals with chronic illnesses. They may compare themselves to others and feel guilty for not being able to live up to societal expectations or norms.

Dealing with feelings of guilt associated with chronic illness can be challenging, but it's important to address them in a healthy and constructive way. Here are some strategies for coping with guilt:

Practice self-compassion: Be kind to yourself and recognize that having a chronic illness is not your fault. Treat yourself with the same compassion and understanding that you would offer to a loved one in a similar situation. You have an awful lot to come to terms with and it may take some time, give yourself that time and space.
Seek support: Talk to trusted friends or people who understand because they have been through the same experience eg in one of the support groups at the National Aspergillosis Centre, family members, or a therapist about your feelings of guilt. Sharing your emotions with others who understand can help validate your experiences and provide comfort and reassurance.
Set realistic expectations: Adjust your expectations and goals to align with your current abilities and limitations. Focus on what you can do rather than dwelling on what you can't, and celebrate your accomplishments no matter how small. In other words to use a phrase uttered regularly in the NAC support groups - find your new normal.
Practice gratitude: Cultivate a sense of gratitude for the support and resources available to you, as well as the things that bring you joy and fulfilment despite your illness. Focus on the positive aspects of your life rather than dwelling on feelings of guilt or inadequacy.
Engage in self-care: Prioritize self-care activities that promote your physical, emotional, and mental well-being, such as getting enough rest, eating a balanced diet, exercising within your limits, and engaging in activities that bring you pleasure and relaxation.
Challenge negative thoughts: Challenge negative thoughts and beliefs that contribute to feelings of guilt or self-blame. Replace them with more balanced and compassionate perspectives, reminding yourself that you are doing the best you can under challenging circumstances.

Remember that it's okay to seek professional help if you're struggling to cope with feelings of guilt or if they're significantly impacting your quality of life. A therapist or counsellor can provide additional support and guidance tailored to your specific needs and circumstances.

NOTE You may find it useful to also read our article on grief.

Graham Atherton, National Aspergillosis Centre April 2024

by GAtherton

ABPA guidelines update 2024

Authoritative health-based organisations throughout the world occasionally release guidelines for doctors on specific health problems. This helps everyone give patients a consistent level of the right care, diagnosis and treatment and is particularly useful when the health problem is relatively uncommon and access to expert opinion is difficult.

The International Society for Human and Animal Mycology (ISHAM) is one such international organisation that specialises in fungal diseases. It runs a lot of 'working groups' designed to address and discuss a whole range of fungal infections, run by ISHAM members from a wide range of backgrounds.

One such group is the ABPA working group, and this group has just released an update to its clinical practice guidelines for ABPA.

The new guidelines introduce a range of changes designed to efficiently capture more cases of ABPA, enabling the patient to get the right treatment. For example they suggest reducing the requirement for a total IgE test result score of 1000IU/mL to 500. They also suggest that all new admissions who are adults with severe asthma are routinely tested for total IgE, and children who symptoms are difficult to treat should also be tested. ABPA should be diagnosed when there is radiological evidence or appropriate predisposing conditions eg asthma, bronchiectasis along with IgE >500/IgG/eosinophils.

Doctors should take care not to miss cases of fungal sensitisation caused by fungi other than Aspergillus (ABPM).

Instead of staging ABPA, they suggest putting the patient into groups that don't suggest progression of the disease.

The group suggests not routinely treating ABPA patients who have no symptoms, and if they develop acute ABPA oral steroids or itraconazole. If the symptoms keep recurring then use a combination of prednisolone and itraconazole.

Biologic medication is not appropriate as a first option for treating ABPA

Read the full guidelines here

by GAtherton

Salbutamol nebuliser solution shortage

We have been informed that there is an ongoing shortage of salbutamol solutions for nebulisers that is likely to last until summer 2024. If you live in Greater Manchester and you have COPD or asthma your GP has been provided with guidelines to ensure that any impact on your care is minimised, and your GP will be able to advise you further.

GPs elsewhere in the UK will also need to prepare, and update your action plan accordingly.

If at all concerned contact your GP for advice, as all should be aware of this situation.

by GAtherton

Celebrating British Science Week: The Vital Role of the Mycology Reference Centre Manchester

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British Science Week presents the ideal opportunity to highlight the exceptional work of our colleagues at the Mycology Reference Centre Manchester (MRCM). Renowned for its expertise in diagnosing, treating, and researching fungal infections, the MRCM has made vital contributions to fungal diagnostics and patient care. In 2017 the centre was designated a European Confederation of Medical Mycology (ECMM) Centre of Excellence in Clinical and Laboratory Mycology and Clinical Studies. This designation was further extended in 2021, highlighting the MRCM's dedication to advancing research capabilities, enhancing resources, and fostering international collaboration. Such efforts contribute to the development of services and ensure that the MRCM remains at the forefront of medical mycology, setting standards for diagnostic excellence and patient care.

Located at Wythenshawe Hospital and operating under the Manchester University NHS Foundation Trust (MFT), the Mycology Reference Centre Manchester (MRCM) provides specialist mycology diagnostic services within Greater Manchester and throughout the UK. The centre offers an extensive range of services, including antifungal management and mycological guidance on diagnosing diseases and clinical management and care of patients. Their expertise covers a broad spectrum of conditions, including Candida infections and chronic and invasive Aspergillus infections, in addition to addressing issues related to moulds in homes and their impact on human health.

The importance of the MRCM's work extends beyond diagnosis. Fungal infections, with their ambiguous symptoms, require a combination of clinical observation and laboratory investigation for accurate identification and treatment. The MRCM's accredited diagnostic work provides clarity and direction for effective patient management.

Moreover, the MRCM, in collaboration with the National Aspergillosis Centre, contributes significantly to the academic sphere. Both centres work with the University of Manchester Fungal Infection Group (MFIG) and play a vital role in the education and training of future medical professionals through undergraduate and post-graduate programmes in Medical Mycology and Infectious Diseases. This educational role ensures high-quality training for professionals entering the field, further strengthening the UK's capacity to combat the growing problem of fungal diseases and antimicrobial resistance.

The Mycology Reference Centre Manchester is a cornerstone for fungal diagnostics, a hub for international training and research, and a critical partner in the global fight against fungal infections. As we celebrate British Science Week, we would like to take the opportunity to acknowledge and commend the work of our colleagues at the MRCM and their invaluable contributions to science, medicine, and patient care both nationally and internationally.

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by GAtherton

Patient Reflection on Research: The Bronchiectasis Exacerbation Diary

In this post, Evelyn embarks on a reflective journey, chronicling the evolution of her illness from childhood diagnosis to the present day, a timeline characterised by bilateral severe cystic bronchiectasis complicated by the colonisation of aspergillus and the less common scedosporium. For Evelyn, keeping a diary, noting symptoms, infections, and treatment strategies has been a way to make sense of the unpredictability of her health. This habit, instilled years ago by a forward-thinking consultant, transcends its practical utility, evolving into a critical tool for patient empowerment and self-advocacy.

When searching the web for help refining her symptom diary, Evelyn came across a paper titled: The Bronchiectasis Exacerbation Diary. This paper was a revelation of sorts. It cast light on often-overlooked aspects of the patient-experience and validated the often inexplicable symptoms that Evelyn experiences. It is evidence as to the power of patient-centered research and the impact of seeing lived experience acknowledged in scientific literature.

Evelyn's below reflection is a reminder of the broader implications of chronic illness on daily life and the need to adapt to navigate daily life.

As a result of a conversation with Lauren recently concerning the use of a symptom diary/journal, I came across a paper published on the internet, ‘The Bronchiectasis Exacerbation Diary’. Diagnosed in childhood with a chronic respiratory disease which has progressed throughout my life, I have bilateral severe cystic bronchiectasis with colonisation of aspergillus and the rarer fungi, scedosporium.

I have long been accustomed to keeping notes of symptoms/infections/treatment, having been encouraged to do so, many years ago, by a consultant for ease of reference at appointments. He emphasised treating infections should be dependent on the result of a sputum culture and sensitivity and not on a “Russian roulette” approach, as he called broad spectrum antibiotics; without knowing what type of infection was involved. Thankfully, my GP was co-operative, as at that time cultures were not routine. (I had dreaded acquiring a reputation as a bolshie patient!)

Reading the above mentioned paper was a revelation. It brought together the range of symptoms I experience daily, even some symptoms I felt were not appropriate to mention at clinic consultations. Moreover, I felt validated.

There have been occasions, albeit rarely, when I have doubted myself, none more so than when one clinician inferred I was psychosomatic. This was my lowest point. Thankfully, following this I was referred to a respiratory physician at Wythenshawe Hospital who, when a culture showed aspergillus, transferred me to Professor Denning’s care; as they say “every cloud has a silver lining”. Aspergillus had previously been found in a culture at another hospital in 1995/6, but not treated in the way it was at Wythenshawe.

Not only everyday symptoms were considered in the article, but also the immediate impact patients’ experience with daily living. Also, in a wider sense, the general impacts on our lives and the adjustments we all face in coping – all of which I can so easily identify with in my own life.

I felt so encouraged reading the paper as despite all of the various types of patient information leaflets I have read through the years, none were so comprehensive.

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by GAtherton

Empowering Patients through Understanding Professional Medical Guidelines

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Navigating the healthcare landscape can be daunting for patients and their families, especially when dealing with complex lung conditions like aspergillosis. Understanding medical jargon and diagnostic and treatment paths is often overwhelming. This is where the European Lung Foundation (ELF) can help with its initiative to demystify professional medical guidelines.

The Importance of Lay Versions of Guidelines

The ERS provides detailed clinical guidelines for healthcare professionals, outlining the best practices in the diagnosis, management, and treatment of various lung conditions. However, these documents are often technical and challenging for non-clinical people to understand. Recognising this gap, the ELF has produced lay versions of these guidelines. These simplified versions can help support patient education and empower individuals to understand their health conditions better.

Why Patients Should Utilise These Guidelines:

Enhanced Patient Engagement: Understanding these guidelines enables patients to actively participate in their healthcare decisions.
Improved Communication with Clinicians: Patients who understand the guidelines can communicate more effectively with their doctors, leading to better healthcare outcomes.
Empowerment in Managing Health: Knowledge of treatment standards and protocols allows patients to advocate for their health and ensures they receive the best possible care.

The Role of Guidelines in Healthcare

Clinical guidelines are vital in ensuring consistency and quality in healthcare. They provide a framework for healthcare professionals to deliver the most effective treatments based on the latest research and best practices.

The ELF's effort in translating professional guidelines into layman's terms is a commendable step towards patient empowerment. By understanding these guidelines, patients and their caregivers can navigate the healthcare system more effectively, ensuring they receive the best possible care for their lung conditions.

We encourage patients, their carers and families to explore these resources provided by the European Lung Foundation to better understand their health conditions and treatment options.

You can access the guidelines by visiting here.

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by GAtherton

ELF holds their first Breathe Clean Air patient conference

Last week the European Lung Foundation held their first Air Pollution and Climate Change patient conference, where people came together to share personal experiences and hear about the latest research. All recordings are available to watch on demand via their YouTube channel, including moving personal stories from Tessa Jelen (Breathe Easy Westminster) and Rosamund Adoo-Kissi-Debrah (mother of Ella Roberta)

This will hopefully be the first in a series, so keep watching their website for dates of future meetings (it’s free and online). ELF organise many patient advocacy activities and also hold patient conferences for topics such as bronchiectasis, pulmonary fibrosis and asthma.

How can we improve indoor air quality at home?

Many aspergillosis patients find their symptoms are aggravated by poor air quality within the home, especially if they have related conditions such as asthma or COPD. Cigarette smoke and damp/mould are obvious sources, but problems can also be caused by the products we use to keep our homes smelling nice.

Triggers vary greatly from person to person and the scientific data on this subject is currently quite incomplete, so people are often not believed. Family, friends and even shops can be very reluctant to believe that their air fresheners and scented candles could be harmful. If you have problems with family and friends doubting, try sharing this infographic

Damp and mould are hazardous to health and should be minimised for everyone, particularly children and those with lung conditions. NICE (NHS) issued guidelines for professionals in 2021 that give specific recommendations for doctors, construction and local authorities. Shelter provide a guide for people living in damp rentals or council housing.
Gas cookers release particulates that should be removed by using an extraction fan (remember to change the filter regularly!) and opening a window for 10 minutes after cooking. If you are replacing your cooker, consider switching to electric/induction hob
Scented candles and incense produce large amounts of particulates and should not be used regularly, especially in small, poorly-ventilated rooms like bathrooms
Volatile organic compounds (VOCs) can be found in cleaning products and deodorant sprays

How can we improve outdoor air quality for everyone?

Unfortunately many aspects of air pollution are beyond our individual control, so it is also important for lung patients to come together and advocate for better laws and protections.

Attend future ELF patient conferences
Get involved in Healthy Lungs for Life
Become an ELF clean air advocate
Watch out for ELF activities at the European Respiratory Society medical conference (Sep 2024)
Follow ELF on X (formerly Twitter)

by GAtherton

Thoughts on the Aspergillosis Journey Five Years On - November 2023

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Alison Heckler ABPA

I have written about the initial journey and diagnosis before, but the ongoing Journey occupies my thoughts these days. From a Lung/Aspergillosis/ Breathing perspective, now that we are coming into summer in New Zealand, I feel I’m doing ok, looking and feeling well.

Some of my current Medical Background:-

I started the biologic, mepolizumab (Nucala), in September 2022 after a really difficult 12 months (another story). By Christmas, I was much improved and, from a breathing and energy perspective, had a good summer; although the weather was so bad, it was hardly a summer.

I got complacent about precautions, and in early February, a grandson visited with what turned out to be a nasty flu that I then went down with. 6 weeks later, a follow-up X-ray on the lungs showed a heart issue that needed a cardiologist to check “well the aortic stenosis isn’t a big worry but the aortic duct never healed over as a child. We could repair but …..” the answer to that was “I’m over 70, had four pregnancies, I’m still here & the risk factors with all my other issues ….. not going to happen”

Once finally over those two hiccups, my 81-year-old sister was admitted to the hospital, and I was trying to advocate for her. She got Covid, which I subsequently got from her. (I had done well to stay Covid Free for 2.5 years). But yet again, any infection I get these days takes much longer to recover from; I still had it at four weeks, and at 6-8 weeks, my GP was concerned that I might have developed Long Covid as my BP and heart rate were still a bit on the high side! My sister was diagnosed with Myeloma and died within six weeks of diagnosis.

Since starting the Mepolizumab, I had noticed increasing problems with incontinence, and this developed in a full-blown Pyelonephritis (eColi Kidney Infection). As I only have one kidney, the anxiety level over this was a bit high as the symptoms were/are all very similar to when my other kidney was eventually removed. (No plan B here). Toss-up: able to breathe versus learning to deal with some incontinence?

I overlay all of 2023 with ongoing Mental Health issues with my 13-14-year-old granddaughter, so my daughter and her husband, on whose property I live, were totally preoccupied with trying to keep her safe and all the care that she requires. We are all grieving the loss of this child who is now in care.

Pain levels are high, and energy levels are very low. Prednisone has essentially killed my cortisol production, so I have Secondary Adrenal Insufficiency and Osteoporosis.

But I am Thankful

I am so grateful that I am blessed to live in a country that has a Public Health System (be it a similarly crumbling one as NHS). I was able to move to an area that has a good teaching hospital and be close to my daughter (Palliative Care physician) & her husband (Anaesthetist), I have access to free public health medications and an excellent GP who listens, looks at the whole picture and does her best to get all the Specialist to review the situation. Recent x-rays and Dexta Scan revealed the extent of the damage and deterioration of the spin: Info I need to bring to the attention of the Physio who is trying to help with my motivation/activation of strengthening exercises. Endocrinology suggested a 5mg increase in my hydrocortisone and a pushing out of the dose timing, and that has made a HUGE difference in how I cope with dealing with all that is going on and the pain. Urology has finally accepted a referral to review my kidney situation, although it still might be a few months before they see me. A recent checkup with the Physio found that the exercises had made a difference, and I was considerably stronger in my legs. I still struggle to do these, but this information informs me that I need to persist.

The Biggest Battle is Mental Attitude

Each of our stories will be unique, and for each of us, the battle is real. (When I write mine all down, it does sound a bit overwhelming, but generally, I don’t think of it in that way. I have shared my story only as an example of the complexity of the journey.)

How do we cope with all of the changes that come upon us? I knew that my health would change as I got older, but I feel like it has come upon me so rapidly. I didn’t think of myself as old, but my body is most definitely thinking and behaving that way!

Learning to:

Accept the things I cannot change,

to Work on the things I can change,

And the wisdom to know the difference

This process of letting go of dreams and hopes and setting new, more modest goals has been important. I have learned that after a more strenuous activity (by my current abilities), I have to sit down and rest or do something that allows me to rest and be productive. I have previously been somewhat of a ‘workaholic’ and not much of a planner, so this transition has not been easy. All of these changes are a Grieving Process, and like any grief, we heal better if we acknowledge it for what it is, then we can learn to live with our grief. We can move forward into all the ‘new normals’. I now have a planning diary with notes on what I want/need to do, but it is not planned out in detail as I have to “go with the flow” as it were on how much energy I have available to get things done. The reward is that I will eventually get things ticked off. If it’s only 1 or 2 daily tasks, that’s ok.

When I finally got a diagnosis in 2019, I was told that “it was not lung cancer; it was ABPA, which is chronic and incurable but could be managed”. What ‘be managed’ entailed, I most definitely did not take in at the time. Every medication that we take is going to have a side effect; antifungals and prednisone are way up there in that respect, and it is sometimes the side issues that are more difficult to cope with. Mentally, I have to remind myself that I can breathe and haven’t died of secondary pneumonia because of the meds that keep the aspergillosis under control. I am alive because I manage my intake of Hydrocortisone every day.

Weighing up the benefits versus the side effects. There are some medications that once I studied the side effects and contraindications and weighed that info against the benefits for relieving Peripheral Neuropathy, I consulted with a Dr, and we dropped it. Other medications do have to stay, and you learn to live with the irritations (rashes, dry skin, extra back pain, etc.). Again, we are each unique in what we can manage, and sometimes, it is the attitude (stubbornness) with which we approach the situation that will determine our direction.

A note on stubborn…. Last year, I set myself the goal of getting my daily average walking distance back up to 3k per day. It was a bit of a mission when some days I wasn’t reaching 1.5K. Today, I managed a 4.5 flat walk on the beach and, more importantly, saw the daily average over the past 12 months get to 3k per day. So, I celebrate a win for as long as it lasts. I make clip-on pouches for my iPhone so that I always carry it to record my steps, and I recently purchased a Smart Watch that includes recording all my health data statistics. It is a new normal to track this stuff, and the NAC research Team is wondering if such data could help us predict ABPA flares etc.

For me, my faith in the sovereignty of God is paramount in keeping me focused and moving forward.

“He knit me together in my mother's womb. My days are ordered by his hand.” Psalm 139.

I have been saved by Grace, by Christ alone.

Yes, a number of my medical conditions could/will contribute to my death; we all die at some point, but I can live the best life I can now, knowing that God still has work for me to do.

“This world is not my home. I’m just a passing through.”

Talking with others on Teams Video and reading posts or stories on Facebook Support or the website all add to helping me keep positive. (At least most of the time) Hearing other people's stories helps to put my own back into perspective … I could be worse. So, as best I can, with the Lord’s help, I hope to encourage others to keep walking on the difficult road you sometimes find yourself on. Yes, it can be very difficult at times, but look at it as a new challenge. We are not promised an easy life.
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by GAtherton